Wednesday, 21 September 2011

The hardest bit of cramming I ever did

As a freelance advertising copywriter working for countless organisations in very different market places, cramming up on information is second nature. Often I have to get to grips with a client's entire business pretty much instantly in order to write a meaningful website or whatever. Everything from scientific instruments to complicated software platforms... I've crammed up on them all. Likewise it was second nature to cram up on baby and toddler care during Ben's first few years of life. But eating disorders proved to be altogether different...

Now, I am not a clinician or eating disorders professional, I'm just a plain common-or-garden mum and I can only write from that viewpoint.

But once I realised that Ben was hurtling into an eating disorder, the urge to cram up on information immediately kicked in. The trouble was, I quickly became aware that everywhere I looked I was getting mixed messages.

Also, unlike baby and toddler care, which naturally puts the well-being of the child first, no medical team swooped in to explain exactly what I should do and when, starting RIGHT NOW.

So, initially, I was left with the Internet.

And, like any condition you look up on the Internet, there's a tonne of different stuff out there - some of it purporting to be written by 'experts', some by parents of children with eating disorders, some by the patients themselves, and most of it pretty darn terrifying. Not just in terms of the short and long-term prognosis, but in terms of the way it all conflicted with each other. And that's not even mentioning all the sensationalist newspaper headlines and articles about eating disorders...

Even the various 'helplines' I stumbled across offered conflicting advice. Hell, here I was, faced with an illness I was rapidly learning could actually destroy my son's life, yet I had no idea which advice to follow, if any. Or even if it would work. I didn't know of any other families with teenagers with eating disorders, so I couldn't talk to them. And, as you'll know from the previous posts, I was getting precious little help from the medical profession.

As a result, those first few months of cramming were a case of trial and error.

Thankfully a number of people came to my rescue.

The first was the school nurse who, as you might expect, had some experience of teenagers with eating disorders. Not boys, though. Just girls. It was she that first talked to me about the help that was available. It was she that told me about CAMHS - the eating disorder treatment available through the NHS for teenagers in the UK. My GP didn't even mention it.

The second was a private therapist and former CAMHS employee we hired as a 'stop gap' in December 2009. Although I found 'stop gap' 'treatment' pretty useless... a bit like trying to bale out the Titanic with an eggcup... this therapist did help push my learning curve in the right direction.

The third came in late December 2009 when, just through pure chance, I stumbled across the Around The Dinner Table forum and its 'parent' website F.E.A.S.T. This US-based forum offers advice and support for parents of teenagers with eating disorders. It has members, moderators and mentors from all over the world and, from the very first moment I discovered it, I knew I'd struck gold.

Another excellent thing about ATDT and F.E.A.S.T. is that the parents that run and moderate it have close links with the world's leading eating disorder specialists, so they're pretty clued up on the latest evidence based treatment, thinking and publications.

The ATDT forum enabled me to finally home in on the information that mattered and filter out that which didn't. It also enabled me to talk to people that had been through this experience and come out the other end successfully.

I discovered that, even though Ben is a boy and that all our children had been catapulted into this mess for a variety of different reasons, their eating disorder behaviours and thinking were uncannily similar. Likewise, the kind of recovery approach that worked tended to be similar. Not identical in every case, of course, but very similar.

I only wish to heck that I'd found this forum sooner. Six months sooner, ideally.

The point is... I spent months cramming up on information I wasn't entirely sure was current or even accurate. And the sheer amount of conflicting stuff worried me. After all, my son's life could be at stake here. And, unlike other medical conditions, the sufferer can actually RESIST or REFUSE treatment. You're not just fighting an illness, you're also fighting your child, which is really weird until you 'get used to it'.

I am not saying that the ATDT parents possess the 'magic bullet' that 'cures' eating disorders at a single stroke. Or that they know as much as, or more than, clinicians and experts.

What I am saying is that the forum guided me towards the latest thinking on eating disorders - an illness whose treatment has changed quite radically in recent years.

Yet it's also an illness that is so complex, not even the world's leading experts claim to have the complete answer. I get the impression things are still very much at 'experimental' stage, the tip of a monumental iceberg. Yet certain methods DO seem to work as we in the Matty household have discovered on our own journey. This is why, over the past 18 months or so, I've felt sure we are doing the right thing for our son.

So to conclude... (before I start rambling further...)

I'm a dab hand at cramming information quickly and boiling it down into what matters and what doesn't.

Yet cramming up on eating disorders was one of the hardest things I will ever do.

Hopefully the good thing about the ATDT forum and this blog is that it will enable other parents to find their way onto the Recovery Road a little sooner than we did.

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